Small Fiber Neuropathy: What helps?

Hello @lisa965, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I saw in your previous post that you mentioned taking Ciprofloxacin (?) and this was when your autonomic neuropathies started. I know that must be extremely difficult for you with all of the painful symptoms and not getting much help after seeing so many doctors.

Since you have seen so many different doctors, have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic where a multidisciplinary teamwork approach is used by doctors and specialists?

Well i was at alb med totally useless its taken me another 4 yrs to get a referral and insurance to approve me to go to mass general ..now weve spent 2 weeks trying to get these drs to fax records .no one has any records ??ridiculous what ive been through wasted my life over a uti

All my neuropathy issues were instant onset that 3rd day of cipro boom left here normal 4 hrs later i came home a different person n other than drs via med cab ive been locked up here since .i have no meds no pain relief no help ..im at the end of my rope ..the circus of drs ive dealt with is like medical negligence ..just ignore me ill go away .then no records nots in files ??bizarre ..instead of treating what testing proved i have .ive been sent for 100s of tests for everything on earth some multiple times .its not normal

Hello @one00100, Welcome to Connect. This is a reply to your post in another discussion - At a loss, multiple consultations still no answer...any idea? so that when you receive this email notification you will be viewing the Small Fiber Neuropathy discussion and can ask questions about your wife's small fiber neuropathy and learn what others have shared.

You may also find the following discussion helpful - Small Fiber Neuropathy BOOK!: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-book/

Can you share a little more about your wife's diagnosis and any treatments she has started?

I have SFN with no pain. I have been on Pregabalin for 2 months, currently 100mg, twice daily. So far it has only helped with tingling. There is no change to the tightness/numbness with my feet. I expected more relief from the Rx. Am I expecting too much? Anyone else in the same boat? Thanks.

My neurologist told me their are no medications that will help with numbness. Prior to be diagnosed with idiopathic small fiber PN, my PCP prescribed gabapentin which I took for 2 weeks and it did nothing for my numbness so I stopped taking it. There is another discussion on the numbness symptom you might want to read what other members have shared.

Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

I also have some of your same issues. I was told let's deal with one issue at a time, meaning they are not connected. Like you, I looked it up and they are connected. I have a new dr appt. in a few days. Let's see what he has to say.

EMG/NCS testing assesses the functionality of the "large" fibers. These are the ones that are employed for both "voluntary" and "autonomic" functions. Based on these tests, my first Neurologist concluded "SFSN". I brought the written results to a second Neurologist. She had some doubts and conducted the tests again.
Her conclusion?
CIDP.
She followed up with numerous blood tests and I am now undergoing Ivig infusions.
Apparently the EMG/NCS tests are tricky and subject to variables, including "temperature".
I suggest a second opinion.

Did your first neurologist do the skin punch biopsy to get the SFN diagnosis?

Neither Neurologist did a skin biopsy. I am not sure why.
With respect to Neurologist #2, my guess is, my description of (sensory) symptoms, along with EMG/NCS findings pertaining to motor nerve issues, is sufficient to conclude both large and small fibers are demyelinating